Long-term Care for Alzheimer’s and Dementia

With people living increasingly longer lives, the risk of developing Alzheimer’s disease or some other type of dementia is a very real possibility. In fact, someone is diagnosed with Alzheimer’s almost every minute in the U.S., while 1 of every 3 seniors will die with some form of dementia.

In this guide, you will learn about the changing care needs of individuals with Alzheimer’s disease and other dementias as well as some of the financial and legal needs that may arise. In addition, we will identify some important things to consider and steps to take when selecting a long-term care facility for a person with Alzheimer’s or dementia. We will also highlight some of the key organizations and supports for caregivers and families of those affected by these disorders.

What is dementia?

Dementia refers to a disorder in which there is usually progressive cognitive impairment that affects a person’s memory and emotions as well as their ability to speak, plan, learn, reason, and eventually, perform everyday tasks.

However, there are some forms of reversible dementia, if the cause is identified and stopped soon enough such as brain infections like meningitis, thyroid impairment, nutritional deficiencies, and excessive alcohol consumption to name a few.

There are different types of dementia that have been identified according to the type of changes or location of changes in the brain that are causing the impairment. Other forms of dementia are associated with various medical conditions. Some different types of dementia include:

  • Vascular dementia
  • Lewy body dementia
  • Alzheimer’s disease
  • Frontotemporal dementia
  • Dementia resulting from Parkinson’s disease
  • Creutzfeldt-Jakob disease (also known as “mad cow” disease)
  • Mixed dementia (more than one type of dementia)

Many individuals who have dementia have more than one type of dementia which is referred to as mixed dementia.

Alzheimer’s disease, as noted above, is one form of dementia that involves a chronic and progressive degeneration of brain tissue that changes and becomes filled with abnormal clumps of tissue called amyloid plaques and tangled brain fibers called neurofibrillary or “tau” tangles.

The disease was identified by Dr. Alois Alzheimer in 1906 after he examined the brain of a woman who died of an unusual illness and found these clumps and tangles of tissue in her brain.

Symptoms of Alzheimer’s disease and dementia

Because Alzheimer’s disease and other dementias can affect different areas of the brain, the symptoms that a person displays will depend on what area of the brain is damaged. Nevertheless, in order for a person to be diagnosed with “dementia”, they must have significant impairment in two or more of the following areas:

  • Difficulty communicating and using language
  • Difficulty concentrating and paying attention
  • Difficulty with judgment and reasoning
  • Difficulty with visual perception
  • Memory problems

Other symptoms that individuals with Alzheimer’s disease may have that are also common to other types of dementia include difficulty performing routine tasks and changes in personality and behavior such as:

  • Loss of interest in things that a person used to find interest in
  • Changes in mood (including increased irritability or aggression)
  • Loss of trust in others
  • Decreased social engagement with others
  • Difficulty sleeping or altered sleep patterns
  • Development of delusions and/or hallucinations
  • Depression
  • Difficulty wayfinding and increased wandering

Alzheimer’s and dementia care needs

The care needs of an individual with Alzheimer’s disease or other dementia will depend on how advanced their cognitive impairment has become and what symptoms they have.

Activities of daily living

In the early stages of most dementias, an individual is able to function relatively well in their own home, particularly if a caregiver is present. Common daily tasks such as running errands, buying groceries, paying bills, housekeeping, and laundry can quickly become difficult for a person with dementia to perform since most of these tasks require a significant amount of memory function and some planning.

As an alternative, an individual in the early to middle stages of memory loss may also be able to live as independently as possible in an assisted living facility (ALF) or memory care facility where staff members are available 24-hours a day to assist the individual and ensure their safety.

As the person’s cognitive functioning becomes more impaired, they may need various levels of assistance with personal tasks such as eating, bathing, dressing, mobilizing, and toileting. These tasks are referred to as activities of daily living (ADLs) by health care professionals.

Individuals with dementia are also at risk of becoming malnourished and dehydrated because they forget to eat and drink. A reduced appetite is also common with the disorder. As a result, it is important for caregivers to offer frequent high calorie and nutritious snacks and foods.

If the person does not sit down long enough to eat, it can be helpful to provide foods that they can hold in their hands such as snack bars and sandwiches if they tend to walk or wander frequently. They may also need frequent gentle cueing to eat the food that is in their hand because they may forget that it is there.

As the disorder progresses, the person requires increasingly more assistance with daily activities until a spouse or family is no longer able to provide the level of care the individual requires in the home, even with the assistance of home care.

Medication management

Once it has been identified that an individual is having memory loss and difficulties with judgment and reasoning, is important to have a caregiver administer all medications that the person may need to take.

In order to enable the person to stay as independent as possible, family members may consider purchasing a pill container — called a dosette — in which they place only the medication required for the next dose where the person with dementia can see and access it.

However, a caregiver should ensure they actually see the senior takes the pills, rather than put them in their pocket or place them somewhere else. This may help the person with dementia feel in control and independent in managing their medications while ensuring they do so safely.

In addition, it is recommended that all medications be stored out of sight and secured so the individual with dementia cannot access them for safety reasons.

Behavior management

Various behavioral changes may also occur with Alzheimer’s disease and dementia although these behavioral changes do not occur in everyone with the disorder. Also, some individuals may also demonstrate only a few changes in behavior. Some behavioral changes that have been noted with dementia include:

  • Development of delusions (firm beliefs that something is true or is occurring that is not)
  • Development of hallucinations (seeing, hearing, or feeling sensations that are not present)
  • Frequent wandering
  • Emotional outbursts including crying
  • Personality changes such as increased anxiety, depression, and/or irritability
  • Increased agitation
  • Repetitive behaviors such as rummaging, tearing tissue or paper, looking out a window, yelling or shouting
  • Sleep disturbances

These personality and behavioral changes are often the most distressing and difficult symptoms of the disorder for family and caregivers to manage. Hence, it is often these changes that prompt a spouse or family to consider placing the individual in a long-term care facility where these behaviors can be better managed.

Long-term care for seniors with dementia

Depending on the stage and degree of cognitive decline that a person is experiencing, there are several different long-term care options to meet the needs of those with Alzheimer’s and other dementias.

Home care and home health care

Once an individual begins to require more assistance with some of the ADLs noted above, family members may want to consider hiring the assistance of home care or home health care professionals. These agencies offer staff who are able to come into an individual’s home and provide assistance with a variety of needs.

Home care provides personal care services also known as custodial care such as assistance with bathing, dressing, eating, mobilizing, and toileting. They also usually provide assistance with medication administration. However, they do not provide more advanced nursing care or other medical services or therapy.

If an individual requires other nursing care or physical or occupational therapy, a home health care agency would be able to provide these services in addition to meeting the person‘s personal care needs.

Assisted living facilities (ALF)

When an individual is no longer able to have their needs met by a caregiver, family, or home care or home health care professionals in their own home, an ALF may be the next best step in meeting these needs. Some facilities are a combination of assisted living and memory care facilities which is ideal for individuals in the early to middle stages of memory loss who still want to remain as independent as possible.

In ALFs, care staff are present 24-hours a day to assist an individual with ADLs and ensure they are safe. Most ALFs also usually provide residents assistance with medication administration, daily meals and snacks, transportation, and laundry services. Some facilities also provide opportunities for socialization and some recreational activities designed for residents’ abilities.

Continuing care retirement communities (CCRCs)

A continuing care retirement community (CCRC) is another option for individuals with Alzheimer’s or other dementias. In these communities, a variety of different levels of long-term care services and professionals are available to meet an individual‘s unique care needs.

For example, a person may enter a CCRC as a resident requiring an assisted living level of care because they are still quite independent. However, if the person has a fall or surgery and requires closer medical supervision and more nursing care, they could be transferred to the skilled nursing facility within the CCRC. Once they recovered enough to be more independent again, the staff would transfer the person back to their assisted living residence within the CCRC.

Conversely, if the person did not recover and required closer observation and more assistance with nursing care on an ongoing basis, they could be transferred to the nursing home facility within the CCRC to continue living there.

Although CCRC‘s can be quite costly, a key advantage of CCRC’s is that an individual is able to experience continuity of care as their needs change and fluctuate. Staff in the facility get to know each resident including their particular needs and preferences which can significantly improve quality of life for residents needing long-term care.

Nursing homes

For those who cannot afford the high entrance fee and ongoing costs of a CCRC, a nursing home may be an appropriate option for the person whose cognitive decline requires that they require 24-hour nursing care.

Services in a nursing home include various levels of nursing care as well as physical therapy in some facilities. Other services include medical assessment, meals and snacks, opportunities for recreation and socialization, as well as transportation in some facilities.

If an individual has been falling or is at a high risk for falls, a nursing home may be a safer place for them to be where staff can implement a falls prevention protocol and assist them with mobilization in order to prevent falls. If an individual has other chronic health conditions in addition to Alzheimer’s or some other dementia, a nursing home will often be able to provide the higher level of care and ongoing assessment that the individual needs.

Specialized memory care facilities

If an individual with dementia has particularly problematic behaviors or has several symptoms associated with the disorder such as hallucinations, delusions, and visual disturbances, a memory care facility may best meet the person‘s needs. Special care units or facilities for dementia typically have a higher staff to resident ratio to ensure more staff are available to help residents remain safe in their environment and help manage distressing behavior.

Memory care units and facilities are often architecturally designed so that hallways do not abruptly end at a wall or door that the resident cannot move through. Instead, these facilities are often designed in a circular or oval fashion so that residents are able to walk continuously without any perceived barriers.

Due to the visual perception disturbances that occur with Alzheimer’s and dementia, these facilities are also well lit and colors in the environment are carefully chosen so that they assist residents to visually navigate their environment with more ease and less agitation and confusion.

Selecting Alzheimer’s and dementia care

Once an individual and their family have identified the type of long-term care that the person needs, it is important to begin researching the different agencies or facilities that provide this type of care. When selecting an agency or facility, some important considerations include:

  • Level of care provided
  • Distance of facility from a spouse or family
  • Services that are and are not included
  • Staff-to-resident ratios during the day, evening, and night
  • Experience and training in caring for individuals with dementia
  • How resident falls are handled and what the agency or facility does to prevent falls
  • Physical layout of the facility as it relates to the person’s physical abilities to mobilize
  • Physical environment including ample lighting, cleanliness, offensive odors, clutter in rooms and hallways, disturbing sounds (such as call bells ringing)
  • How staff interact with residents
  • Whether the resident will have a private or shared room and bathroom
  • Safety of the facility for those with dementia (e.g. bed and chair alarms, alarmed and locked exterior doors, absence of stairs due to potential falls)
  • Medical services provided
  • Access to transportation
  • Opportunities for socialization and recreation
  • How resident emergencies are handled and how and when family are notified
  • Quality of the meals and snacks provided
  • Cost of the facility and any additional services that may be required
  • Forms of payment accepted by the agency or facility

Financial needs related to Alzheimer’s and dementia

If an individual was working before they were diagnosed with the dementia, this loss of income can significantly impact both the individual and their spouse or family. However, the person who is no longer able to work due to Alzheimer’s or dementia may be eligible for disability benefits through different programs.

If a person with dementia has worked long enough or if their spouse has worked long enough, they may be eligible for Social Security Disability Insurance (SSDI) benefits if they meet the definition of “disability” according to this program. Medicare also provides assistance to those who meet the definition of “disability” as well as those who are 65 years or older and those who are blind.

If an individual has little or no income, programs such as Medicaid, Social Security Income (SSI), and Program of All-Inclusive Care for the Elderly (PACE) may be able to provide assistance with medical costs and living expenses.

Legal needs related to Alzheimer’s and dementia

As cognitive and behavioral impairment progresses with the disorder, a number of legal needs arise for individuals with this chronic health condition and their family. Some important legal documents for a person with dementia include:

Ideally, these documents will have been prepared before the person is diagnosed with dementia or begins to display symptoms of cognitive impairment. This is important because an individual must be deemed “competent” in order to be able to prepare and sign legal documents. “Competency” refers to a person having the capacity or ability to understand the decisions they are making as well as the consequences of these decisions.

If the individual with dementia does not have these legal documents in place (and they or their family want to have these documents prepared) a doctor or lawyer can help determine whether the person meets the definition of competency.

If an individual is deemed not to be competent and able to prepare legal documents, the laws in each state have various provisions which allow a spouse or family member to obtain conservatorship on the person’s behalf. It is recommended that an individual and their family consult a lawyer to review any existing legal documents to ensure they are current and applicable as well as to discuss preparation of any new documents.

Power of attorney

Power of attorney is a legal document in which an individual (known as the principal) appoints another person (known as the agent) to make decisions on their behalf, usually when they become unable to do so.

There are different types of power of attorney. For example, a person may choose to prepare a general power of attorney document in which they appoint an agent who has broad decision-making powers on their behalf. This type of document would give one’s agent or proxy the ability to make a variety of decisions on their behalf including decisions concerning finances, living arrangements, and health care and medical treatment to name a few.

Conversely, a person may also choose to appoint a specific power of attorney in which they give their agent very narrow and limited decision-making powers. This would include legal documents such as a power of attorney for finances or a power of attorney for health care.

With a power of attorney for finances, an agent is given power to make decisions about another individual’s finances, disposition of assets while the person was alive, as well as pay bills on their behalf.

Likewise, a power of attorney for health care enables an appointed agent to make medical and health care decisions including decisions about medical treatment, participation in clinical trials, resuscitation measures, and end-of-life care.

If an individual has been diagnosed with a chronic and progressive form of dementia such as Alzheimer’s disease, it is important that they have a power of attorney document prepared that gives their agent a broad scope of decision making power on their behalf. It is recommended that an individual and their family consult a lawyer regarding their specific needs or concerns about the type of power of attorney that should be drafted.

Living will

In a living will, a person identifies what medical care and treatment they wish to receive in certain situations and medical circumstances. For example, a person with dementia may not wish to be resuscitated if they sustain a heart attack or are involved in an accident.

A living will ensure that a person’s medical wishes and preferences are clearly known to both family and medical personnel. As a result, this document can be very helpful for one’s power of attorney agent if the time comes that they need to make medical and health care decisions on the person’s behalf.

In the event that an individual does not have a power of attorney, this document provides valuable information to family, medical personnel, and long-term care staff about a person’s wishes for treatment and medical care.

Last will

A last will, also simply known as a will, is another legal document that an individual with dementia should have prepared.

In a will, a person identifies who they wish to leave their remaining assets and belongings to. Those named in the will to receive the assets and belongings are referred to as beneficiaries. A will is particularly important if the individual with dementia has sizable assets or particular belongings or property that they wish to distribute to certain family members or other individuals or charities after their death.

In addition, a will can help provide some certainty for family members and ensure they are not faced with the responsibility of making financial decisions about the disposition of the estate after the person’s death.

Psychological and emotional effects of dementia

The effects that Alzheimer’s and other dementias have on those who are diagnosed with the disorder vary greatly. Individual personalities and the type of dementia diagnosed play a significant role and how individuals are affected. When the disorder is first diagnosed, some common reactions include a feeling of loss, denial, disbelief, sadness, hopelessness, and sometimes anger.

As noted earlier, progressive cognitive decline with the hallmark symptom of memory loss, personality changes, and behavioral changes occur to differing different degrees and at different rates as a result of dementia.

Individuals may also be reluctant to tell others that they have dementia because of the perceived stigmatization associated with the disorder. This perceived stigma and the symptoms of the disorder itself may lead to increased social isolation and eventually depression. If family notice that an individual with dementia appears to be depressed, they should have the person assessed by their doctor. Antidepressants may be necessary to help alleviate symptoms of depression.

In the early stages of dementia, some individuals also find support groups very helpful for sharing their feelings, frustrations, and changes that they are experiencing with others who are living a similar experience.

Dementia's effects on family members

Family members often experience many of the same feelings and emotions initially as those who are diagnosed with the disorder. Feelings of loss, sadness, denial, and hopelessness as well as anger are common in spouses and family members when a family member is diagnosed with dementia.

These initial feelings often give way to feelings of resignation although feelings of sadness, hopelessness, or anger may occur again, particularly when the person has a worsening of symptoms.

Social isolation also commonly becomes a problem for the spouses of individuals with dementia. When an individual with dementia begins to exhibit forgetfulness and personality changes, they and their spouse often avoid social events. Likewise, friends and social acquaintances may feel unsure how to respond to the changes and avoid the senior with dementia altogether.

The perceived social stigma associated with Alzheimer's disease and dementia is also felt by a spouse and family members leading to increased social isolation and loneliness, particularly for a spouse.

As family members take on caregiving responsibilities to assist the person with dementia, this can further increase social isolation since little time may be left for connecting with others. Caregiving responsibilities typically increase as the disorder progresses often resulting in caregiver stress and burnout.

Caregiver burnout often occurs when a caregiver sacrifices their own needs for the needs of the person with dementia. The caregiver may also begin to neglect their own physical, emotional, and medical needs and become ill or depressed as well.

For this reason, it is strongly recommended that someone who is caregiving for a person with dementia reach out and connect with a caregiver support group, either online or in person. Caregiver support groups can be invaluable for caregivers in providing emotional and social support as well as tips about caregiving, respite care, and how to ensure proper self-care to avoid caregiver burnout.

Organizations on Alzheimer’s and dementia

The following organizations provide information, support, and resources for families and individuals living with Alzheimer’s disease and other dementias:

The Alzheimer’s Association

Alzheimer’s Disease International

BrightFocus Foundation

Dementia Care Central

Dementia Society of America

Family Caregiver Alliance

National Institute on Aging

Long-term care for dementia FAQs

  1. What causes Alzheimer’s and dementia?

Researchers currently believe that a combination of lifestyle, environmental, and genetic factors play a role in the development of Alzheimer’s disease. Other forms of dementia may be reversible or nonreversible, depending on the cause which may include factors such as:

  • Infections of the brain, such as meningitis and HIV/AIDS
  • Impaired blood flow to the brain
  • Brain tumors
  • Brain injury
  • Hormone imbalances, such as thyroid dysfunction
  • A buildup of fluid inside or around the brain
  • Drug abuse
  • Alcohol abuse
  • Metabolic disorders, such as diabetes
  • Nutritional deficiencies
  1. My mom has some memory loss and confusion now after surgery and she didn’t have these problems before. Can having surgery when you’re older or anesthetic maybe cause Alzheimer’s?

If your mom had some memory loss and confusion right after surgery which she did not have before, she likely has a condition known as postoperative cognitive dysfunction (POCD). Although POCD can occur in people of any age after surgery, it is more common in older adults. Memory loss and other symptoms of POCD such as the confusion that your mom is having usually resolve within a number of weeks to months. However, in some individuals, particularly those with other chronic health conditions, the symptoms of cognitive impairment may last longer or be permanent.

  1. Our father was diagnosed with vascular dementia months ago. Most recently, he started to wet his pants even when he’s awake and he doesn’t seem to notice. Is this because of his dementia or is something else may be wrong?

The inability to control urinating and or emptying of one’ bowels is known as incontinence. Unfortunately, urinary and bowel incontinence is common, particularly in the later stages of dementia. As you have indicated, your dad is possibly not even aware that he has soiled himself. It is also possible that he is aware and does not know what to do and is possibly embarrassed.

It is also possible that your father has a urinary tract infection (UTI) which can cause a person to leak urine or have an urge to urinate more frequently. It is recommended that you discuss this new finding with your father’s doctor to rule out the possibility of other problems that may be treatable.

The best way to respond is to simply state in a very relaxed and matter-of-fact way that it is time to help him put on some dry pants. There are a number of disposable pull-on style incontinence briefs on the market specifically designed for men which are very effective for this problem. Use of these products also helps individuals who are incontinent avoid embarrassment if they are aware of their incontinence.